Day +7 – Minor changes

Monday July 23, 2012
Quail Run Lot 15
Moffitt Cancer Center Room 3715

 

Last night, after I get home, I wash a load of David’s clothing at the laundry in the park.  He has to have clean clothing every day and only has about 4 pair of long pants that are comfortable enough for this purpose and 4 pair of those non slip sox.  He didn’t want to buy a lot of things for this hospital stay so every 4 days, I do his laundry.

I am up this morning and running before sunrise.  It is 72 degrees and feels comparatively cool.  Within the first 10 minutes the only other people I see out are Karen and Al taking their morning walk.  I am listening to Marian Zimmer Bradley’s The Forest House and am about half way through my run when my walkman tape player sound goes off.  These are used tapes so sometimes I have to bang them down on a hard surface and they will resume behaving properly.  Don’t ask me why this works but it often does.  Not today.  I stop and take the tape out, bang, bang, put it back in, go back to running and still it isn’t playing right.  After a couple of times of this I finally get smart enough to check the batteries.  DUH!   The big E means batteries are dead…I don’t know what the big E is, Empty of power???   I run back to the coach, get two batteries from the supply of rechargeables I keep on hand and I’m good to go.  But the tape doesn’t.  I try the slapping thing a few more times to no avail.  I give up and run with no book to keep me occupied.  Those were a LONG 15 minutes I tell you.  Running around and around the same little roads for an hour is mighty difficult without someone reading me a story.  I really prefer books on tape or CD to listening to music.  With music I find that I’m then singing one or two of the songs for the rest of the day.  Can’t get them out of my head.

When I’ve finished my run, I bring the tape in and use the coach tape player to fast forward it and reverse it fully a couple of times to try to tighten the tape while I do my stretches and lifting.  Sure hope it will be back to its reliable self tomorrow.  Part of the problem may be the way this tape is recorded.  They have two tracks on each side.  So you play both sides with one ear bud in and then change ear buds and play the two sides.  Unless you have a stereo player and then you can just adjust the balance control back and forth.

ANYWAY, thank goodness I had done David’s laundry when I got home last night so I don’t have to do it this morning in addition to all this falderal.

Once that’s taken care of, I clean up, change clothes and fix my breakfast.  I am able to eat it sitting outside at the picnic table.  The temperature is about 82 but the humidity is down.  I read a little of my current book while I’m eating wishing I could put the awning out and stay for hours.  But since I’ll only be out here a little while, it isn’t worth the trouble.  It’s going to rain again this afternoon of course so I put the chairs under the slide so perhaps they won’t get wet.  AGAIN I’ve forgotten to get up on the roof to sweep the water off the slide toppers so they don’t stretch.   That’s two days in a row.  Really have to make a note to myself to do this tonight if it is light enough when I get home.

I fix myself some spaghetti for dinner and pack up his clothing, all my stuff and a dozen not good for you donuts that I know the medical staff on his floor will have no qualms about eating.  I remember a friend of Carrie’s who was in medical school saying with some distain that doctors only take a one semester course in nutrition and the materials are produced by the dairy counsel.  Sad isn’t it.   But I want them to think kindly of him and this is my second gift to sweeten them up.

When I come in to his room laden down with two more long sleeve shirts, all his laundry, my stuff, and donuts his nurse, ?????, is giving him the zofran push to prevent nausea.  David tells me I just missed the Physical Therapist running him through his exercises.  Darn.  I wanted to see them do those and hear her tips.  Oh well….

I check the board and find his counts are holding, rising a tad and dropping; a complete mix. The white blood count is holding at 0.09, two days in a row.  Hemoglobin has actually gone up but insignificantly from 9.6 to 9.7, platelets have dropped from 58 to 46.

 

 

 

He’s had his breakfast, no vomiting, but he is noticing a slight sore throat when he swallows.  I hope this isn’t the beginning of the mouth sores. 

Because of the PT this morning, he has not been on his first walk so we start out to do 6 laps.  As we are turning for the end of lap #2 his PA Mark Honor says, “you’re next” and gestures to the room.  This means the medical team is coming for rounds so we go back to the room to wait.

The door opens but it isn’t the team.  It’s a darling high school girl who asks if we want snacks. “Do you have almond joy and peanuts”?  She does.  I ask David if he’d like some Doritos as well since I know he likes them and I just want him to eat whatever the junk (for now).  But she says no she doesn’t have those.  She recommends Sun chips and brings him a bag of those instead.   I ask her if they’ve allowed her to taste everything so she can recommend.  She laughs and says no but that she’s probably eaten all the stuff on the cart at one time or another.  I am not on the ball with the camera here.  Or when the medical team comes today.

His transplant doctor, Melissa Alsina, is not on rounds this week.  Today Dr. Lia Perez is here with his nurse and the PA.  David tells her about his throat.  She looks at it and says yes the soreness is Mucusitis but his mouth looks clear so there is still hope that he won’t get the sores.   She is pleased to hear no diarrhea and tells us that 0.09 is considered zero and is as low as WBC’s need to go so he has hit the bottom.  She has apparently just come from seeing several other patients in much worse condition since she tells him “You are doing GREAT!”.   Always a good thing to hear from the doctor in charge.

After they leave we continue the laps and notice that there is a sign with 4 falling yellow stars on the door of the man on his same transplant schedule.  I really must find out this man’s name.  He is the one who has diarrhea and now must be at risk of falling since that’s what the sign means.  We feel both very lucky and sorry for him.

When we return his technician for the day Maria comes to do his vital signs.

 

 

David  pulls his chair around so he can look out the window.  I ask if he’d rather sit on the sofa and we’ll trade places.  He says no, he likes the chair better. 

 

 

The view out the window if you are close enough.

 

 

He works on his records  and notes using one of the pens Carrie gave him for Yule.  The pens have a family history.  For years when she was young, he put multicolored pens in her stocking each year and she really looked forward to it.  But this year she put 3 black pens in his stocking and 3 colored pens in mine turning the tables.  We have both used them a lot and think of her with a smile each time we do.

 

 

 

 

 

 

 

He writes until the cheerful lunch delivery lady brings him another veggie burger.  This time with lettuce and tomato as he has requested.

 

While he is slowly eating his lunch, with the painful swallowing, Patricia (my personal favorite technician) comes in and says “Guess what I have Mr. David?”  She’s holding something behind her back. “Lots of people like you”.  She pulls out a veritable stack of cards.  I guess they don’t deliver on week-ends so he has received 6 get well cards today.  This news gets a big smile.

 

 

The first one is from Carrie and the others from friends and family who have gotten the address either from the blog or from an email I believe his brother Roger sent out containing his address. He reads each one out loud. 

 

 

One of the cards is from his niece Karissa Kathleen, known to the family as KK.  She has included a drawing sent as a get well message from her daughter Olivia Grace whom I guess would be David’s 2nd cousin???  I believe Olivia is 9.  I’d say she has inherited some of the family art talent.  Lucky her.

 

Next in is his nurse Katie again to give him today’s nupogen shot.   This is the beginning of the climb back up.  Nupogen will stimulate his new stem cells to engraft and bring his white blood counts up.  We had been told he would receive the first one tonight.  But she says they would rather give it in the early afternoon since it often causes a fever and they want to know that rather than have it happen over night.  Makes perfect sense to me.  This is not a medication that can be given through the central line like the zofran.  She offers to come back after he has finished his lunch but he asks if having it now might interfere with his eating in any way and when she says no, he says “OK let’s just do it.”   I can’t even imagine getting a shot in my belly while I’m eating.  I guess this is when being a stoic pays off.   He’s passed one nadir. The WBC’s will be higher tomorrow.

 

 

Between the mail delivery, the neupogen shot and reading the cards, it takes him nearly two hours to eat his lunch.  Slow is very good but some of that of course is that his throat is sore when he swallows.  He says he doesn’t notice it otherwise.  He comments that he can still taste things.  He finishes everything on his plate as usual.   I just knew his experience as an Olympic eater was going to come in handy.

 

 

After all this activity, he needs a nap.  I put the note on the door, turn the lights out and get him the fancy eye cover.  No one disturbs him for quite some time until the cleaning lady for whatever reason feels she just has to look in the bathroom, see if the paper towels need refilling at the nurses’ sink in the corner of the room and empty the waste basket NOW.  She’s clearly seen the sign and chosen to ignore it so I decide to say nothing that might wake him up even more  and just glare at her.  He doesn’t move but I know she must have disturbed him.

 

He sleeps for over an hour and when he takes off his improvised eye cover, opens his eyes and says he can see the rain falling outside.  Even with my glasses on, I can’t see raindrops in the air from this distance.   I wonder if the chemo has improved his eyesight.

 

 

 

He nods off again. 

 

 

 

 

 

 

 

He wakes again and wonders aloud “why can’t I sleep for over an hour at night”. 
I have no answer and just tell him to sleep as much as he can whenever he can.  He nods back off.

 

 

When he wakes up for good, I get him the spirometer for his lung exercises.  He does ten of them and only one is below 2000.  His last three are full up to the top.  Way to go!

 

Then out of the blue says “I hate it that my hair is looking better than it’s ever looked. It’s behaving.  It’s not sticking out all over the place.”   This from a man who has been pretty much mostly bald the majority of his life.  Just goes to show that even men who are mostly bald are vain about their hair.  :-))   You tell me, does his hair look better than usual?  Or can you even tell the difference???  Can you see his hair?  LOL

 

He opens his laptop to supposedly read the blog.  I think he’s at least 3 days behind.  But when I look over his shoulder, what he’s really doing is looking at the Turner Classic Movie schedule.  Mutiny on the Bounty tonight at 8pm.  

We go out for walk #2 for the day.  He’s still walking at a good pace.  Not as fast as earlier but a tad faster than yesterday I think.  When he comes back he sits back in his chair with his laptop and opens the bag of Sun Chips. “How do you like them” I ask.  “Here have one” he replies.  He hands me a chip.  I don’t touch his food but he can touch mine. I still have an immune system.  He does not.  He says they are “good”, I think they are “great” and it is with real largess that I don’t snatch the bag out of his hand and tell him to eat his peanuts.  There are at least some benefits to being “not well” as he describes himself.  J

 

He sits quietly in his chair munching his chips and reading something that apparently turns out to be pretty boring.  When he stops crunching I look up and see him sitting up perfectly straight in the imitating being awake in church pose.  Should I take personal offense at  this?  Who wouldn’t find days and days of blogs about nothing but their life to be fascinating??  I guess I’d better give up the idea of writing a novel.

 

 

I eat my dinner first so that I can read to him while he is eating his and until it is time for me to leave.  As per the regular routine, he will have one walk remaining in his list of things to do, other than drink more fluids and get his vital signs checked AGAIN of course.

That’s all for Monday July 23rd.  He still has his taste buds and is eating well. He doesn’t have diarrhea, he hasn’t lost his hair YET, he can still do 6 laps around the halls, blow the spirometer to the top and his weight is holding.  The only new problem is the sore throat when swallowing and some flaring prostatitis.  All in all, a pretty good day.